First check in for the new year! Today is Chris’s 23rd birthday but unfortunately I’m away in England again so I only had the chance to join in on webcam. I did however visit him over Christmas, and I was thrilled to find how chilled out he was compared to the last time I saw him in the summer. I got him a (cheap) watch that he wanted for Christmas but I think, it’s like he knew it was cheap, and he just gave it back and asked for another one! Cheeky bugger. Anyway here’s a video of him blowing out the candles! Happy chappy!
Some positive news! So, St Andrew’s Autism Centre in Singapore run an annual event for parents and clients. After getting really pumped up from a performance by the Boys Brigade, Chris headed up to the stage, grabbed a mic and started singing, completely on his own! I always thought he’d be too shy to do this, but he just went up there without being asked. I’m so proud of him and I hope to see more of it!
This month is Autism Acceptance Month! I’d like to share this short piece with you all.
What is it like having a younger brother on the low-end of the autism spectrum?
I have three words –
Imagine seeing a loved one remain trapped in a body; unable to communicate their feelings easily to others around them. Imagine the isolation they must feel not being able to convey their pain, joy, and sadness, while others look on in pity, disgust and fear. Imagine what goes through their heads, as they self-harm and draw blood in the process. Is self-harm a release from our inability to understand them? Or is it just a way to make them feel more alive?
The disorder itself is so diverse; one becomes extremely aware of the multitudinous differences in personalities not just in people on the spectrum but also in neurotypicals. Seeing Chris struggle with social communication, daily tasks and the lack of motivation to do anything else because no one believes he can is hurtful and eye opening. It makes you see how valuable it is to be more accommodating and understanding to others no matter how difficult they may be to interact with. You realise that neurodiversity can actually be an exciting thing and welcome it. Being more aware of what people go through is invaluable.
You have a shiny, new Gucci handbag? You had a smashing time in Barbados? Got a job at Wall Street? Fantastic! All these pale in comparison to the joy I feel when I see Chris happy. He doesn’t need these things. He knows not the meaning of their value or why people covet them. In the grand scheme of things, they are utterly pointless commodities unless you have friends to share them with. He doesn’t understand the concept of friends. I don’t even know if he understands the concept of family. How can I know? All I can do is continue to show him unconditional love and understanding.
Christmas Brunch in Singapore
My mum and I were having a discussion about how incredibly happy and positive a lot of writers are about their autistic children and every little milestone they make. When searching about how I can help Chris better, most of the time I’m only able to find posts about children on the high-end of the spectrum. Don’t get me wrong, it’s lovely to see parent’s expressing their delight to improvements in their children’s behaviour!
Unfortunately, for those of us who care for low-functioning individuals it’s not quite the same story. As you can see from the photos on this site, Chris is extremely photogenic and it probably doesn’t express the reality of his personality. He’s gone and broken everything I got him for Christmas. I do not for once feel angry at him for it nor do I think he’s being ungrateful. It’s just what he does.
I have to admit, the happy/positive posts about Autism sicken me slightly, and I feel a sense of relief whenever I come across a post about the real struggle with Autism. It helps knowing we’re not the only ones having to to deal with constant bad news and difficult behaviour that never seems to improve. So I found this video floating around the web about Bill Davis and his son named Chris. Davis has published a book called Breaking Autism’s Barriers as told from a father’s point of view. Anyway, enjoy!
View from the wheel
Happy New Year! 🙂
It’s a new year. I gave the blog a new look.
I had a great time with Chris and the family in Singapore. It was short trip but I got a lot done for him. Unfortunately, I do believe he has regressed a bit since I last saw him. He has started being more destructive and anti-social towards everyone. He would take bottles of shampoo and soap and pour their contents down the drain, destroyed the keys on his laptop and cut the strings on his guitar yet again. What is this? Why so destructive? He has nothing to play with now and therefore nothing to entertain himself with. He’s bored at home with just an xbox to play with perhaps some toys.
So, I got him several different presents for Christmas as I wanted to see what interests he had now. I gave him:
- a mini whiteboard and he seems to be using this quite a bit drawing lifts and toilets. Great!
- a light-up tambourine and he looked so happy with it. I heard from mum it’s broken now. Hmm..
- a plant for his room so he can water it as I thought he enjoyed horticulture at school. This was a mistake as he wants nothing to do with it!
- a room redecoration. I tried to emphasise on sensory items and lighting. He really likes clocks and chairs but he wasn’t excited about much else. He gave some things back to mum.
- the Madagascar Xbox game he’d been raving about for so long. He’s not stopped playing it since. That’s wonderful in a sense, but he hasn’t done anything else! Furthermore, when he gets frustrated with the game, he begins to self-harm, so much that he bled through his nose and only stopped hitting his head when I physically showed him the blood.
Here’s a recent paragraph from Shannon Des Roches Rosa, senior editor of TPGA:
“Sometimes aggression and self-injury happen because non-autistic people do not recognize or respect autistic ways of being. It may seem odd to outsiders for a person to constantly want to have a straw in their mouth, for instance, but holding that straw may be intensely soothing to that person and allow them to function in the world better. So if a person needs their environment just so, or needs to repeat phrases for reassurance, and they are not being disruptive … the humane option is to accommodate the autistic person’s preferences.”
– Thinking Person’s Guide to Autism
Now, he dislikes going out on family trips. He seems to just enjoy his own company. I read that this isn’t so good for him. This is extremely difficult. Nothing we’ve done has managed to improve his mood. So I do believe, we need to think of new methods. We must constantly remind ourselves to put ourselves in his shoes. The constant question on my mind is – how do I improve Chris’s quality of life? I keep the above paragraph stored in memory but I’m running out of ideas on what I can do.
On a lighter note, he always loves Christmas and he absolutely enjoys present time. This year we also had dinner on the big wheel in Singapore. He loved it 🙂
Chris on the Singapore Flyer